Inclusion with Protection : Obtaining informed consent when conducting research with adolescents

Abstract

Adolescents – no longer children, not yet adults – are unique beings with human rights, developmental needs and tremendous potential. Enormous progress has been made in the 20th century in our scientific understanding of adolescent health and development, including the increasing recognition of adolescence as a critical period in a life course of well-being. Research on health, development and well-being has contributed immensely to current understanding of adolescence, its challenges and its opportunities. Adolescents are often excluded from research studies – and therefore from the potential benefits of research – because of confusion about whether they should be regarded as children or as adults, and who has the right and ability to give consent for adolescents to participate in research. Moreover, uncertainty about the proper ethical balance between protection from research and inclusion in research has often resulted in adolescent exclusion. This brief focuses on the rapidly evolving capacities of adolescents to make informed choices about their involvement in research. The brief provides a broad introduction to research ethics as they apply to adolescents and reflects on ethical considerations to simultaneously promote the inclusion of adolescents in research and protection from research-related risks. This paper builds on the concepts of evolving capacities and best interests as enunciated in the Convention on the Rights of the Child (CRC). The concept of evolving capacities is particularly useful in guiding ethical thinking about research with adolescents.